Share Your Rare Story

At Patient Worthy, one of our goals is to publish the realities of rare disease. Your voice is an integral part of achieving that goal, so we invite you to share your rare disease story below.

Your article(s) can be about anything you’ve experienced as a member of the rare community, from a favorite recipe or exercise, to major life-changing decisions and challenges. Or if you prefer, you can use one of our prompts to light that spark of creativity. If you are interested in becoming a regular contributor, contact

We review all posts before publishing; however, we want your authentic voice and descriptions to be unaltered by us. If we recommend changing anything outside of grammar, typos, misspellings, headings, or extreme profanity, we will email you the tentative new version for your approval, before we publish. Please review our submission guidelines before you write.

Lastly, upload any photos you’d like to include. If you don’t have any, we will use a stock photo. We thank you for being a part of the Patient Worthy voice!

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We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.
Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

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